To What Lengths People Go

Getting the proper medical and health care that I need has been a struggle since I first got sick in 2010. I was lucky then to have a support team who helped me, even from afar, navigate the mysterious landscape that is MECFS (myalgic encephalomyelitis / chronic fatigue syndrome). And as I got sicker many people stepped up to help when I needed it most. But time fades all.

There is only so long, and to a certain point, that people can help, no matter how much they love you or care about your well-being. People burn out. They run out of time and money and mental bandwidth to lend to even the most beloved person in their life.

The unfortunate reality for myself, is that I’ve been sick long enough that people have stopped helping and it shows. I’m sure they still care, but a detached version that allows them to still sleep at night while I remain awake at 3 AM writing a cathartic blog post. Ahem. Who me? Sigh.

Don’t get me wrong, I don’t feel entitled to anyone’s help, but I certainly feel discouraged when I need things that can’t be accomplished by my own doing or that of someone I know. I’m talking about things I need, not far-fetched wants.

This is the problem and I don’t fault anyone. It is a fucked up situation, and a helpless one for me.

The people I depend on most are overworked and overstressed and deserve to relax and not have to cater to the needs of someone as sick as me. But when they don’t my needs remain unfulfilled. It is a paradox and a reminder to me that this is my fight, at the end of the day I’m in it alone. And I have never felt more alone than this very moment.

Then there are the people who think they help, but don’t. Or the people whom I ask for help, but politely pass the proverbial baton to someone else, or to the universe, or to some old father figure in the sky of whom I don’t believe in. But what irks me most is when I ask for what I need — medical care (the AHCA isn’t going to help — I need Medicaid, sorry folks!) and caregiving (not a Ferrari or a mansion) — and then I am made to feel guilty because I asked. It’s not my fault that I need help. Trust me, I am the last person to want help and perhaps it’s a lesson for me to have to ask. But I still dread it,

So this is all to say one thing: I’m over this shit. I’m so tired of hoping someone or something is going to come along and make my situation better. And the hardest part is I know it is a manageable situation. All I need is a kind and intuitive caregiver for six hours a day. And I need a nurse. And a doctor. And a “vampire” to draw my blood. And a cute woman to snuggle with me at night. And some good books to read. And a new a episode of This American Life every day. And unlimited kombucha and Cliff bars. Sounds like a party, right?﻿

Okay, vent session over. Thanks for reading. Hopefully things get better for me and the people I love. But even if they don’t, just know that I appreciate that you read my blog. Oh, and please check out my latest essay for Mic.

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39 thoughts on “To What Lengths People Go”

Oh I feel the same. I’ve gone through a million nurses. No one seems to understand this disease and how exactly to take care of you, no matter how many times you explain it. I’m beyond frustrated at them as well as my family.

Hey there. Are you needing help finding paid caregivers? Not sure how you currently are going about it, but I’m actually a recruiter and have access to various tools that might help. Finding needles in haystacks is kind of my thing. I would be happy to volunteer to find some resumes of people actively looking for work in your area, if that would help at all. I would just need to know the general profile. I’m assuming a CNA of some sort or someone with med/surg experience would be helpful. Totally volunteering here–so no cost, to be clear. Let me know if you’d like me to help.

i hope you had someone come in to look at the damn IV line. Sounds dreadful. I do get one thing. At the end of the day or in the middle of the night, problems simmer and sometimes boil over and what do you have? You are alone with your thoughts and have no one to rub your feet.

Who wants to listen to this crap over and over again? I, too, feel that I have no one to talk to yet I have met 1,000 people over the years. I have 2 friends that are not sick. One is gone most of the time and I TRULY am happy for her and the other friend talks over me all the time and I would like to strangle her, but I love her. ( I think it is a learning disability…no kidding. I have known her for over 35 years.) I live with someone wonderful, but how can I ask again and again for help? I HATE DEPENDENCE, but I had to get used to it quickly. Lie lie. I have not gotten used to it.

But I am still here, pushing 68, not dirt. I sure hope that your IV line is fixed.

Don’t forget to send me your contact information. I was hoping it wasn’t me, because I couldn’t remember sending you anything with a book attached. My brain has holes – but my inbox had no email from you, so this time it wasn’t me. Absolutely no rush.

I look forward to hearing updates on how your life is going and always hope that it has miraculously improved somehow. It is saddening to hear that there is such a divide between how you would like your care administered and how it is dispensed. People can only do the best they can with what they have – skills, knowledge, attention and time. There is no wand waving here, it is a continuos relationship building exercise and test of character marker. I do not have words to soothe unfortunately but as always I wish you well and thank you for sharing; your words help raise awareness on so many levels

Hi! Thanks for caring and for following my journey. It means a lot. My life has actually improved quite a bit over the last year because my health has improved. But what hasn’t gotten better is my struggle for health care and caregiving. It’s just hard to constantly have to fight for what I need when my energy is so limited. Anyway. Don’t worry about soothing with words, reading my post is good. Thanks!

Thank you, that’s very sweet! Money is not the issue at the moment, perhaps it will be at some point (if the AHCA goes through) but the issue is mainly that I live three hours from any big city and it’s hard to find good help and medical professionals here. And it’s currently 105 degrees. So it goes I guess. Thank you for the offer, Ahimsa! You have a good heart!

Simply put, it sucks. And I hate to add cliché, but none of us ever thought we’d be a part of “this” fraternity — nor did we ever want to be. We all have limitations; sadly, that’s usually when we need others’ help the most. (Intellectually we comprehend this; emotionally accepting the fact is an entirely different matter, especially when we *really* need help and there’s no one there.) I promised myself I wouldn’t go down the TRUMPCARE hole (kinda funny when you think about it — in a masochistic manner) but until that dick and his comrades are out of the ruling majority, things aren’t going to improve for a lot of us. Us being the very people that Obamacare was designed to help. Please hang on and understand that there are people out there who get you; unfortunately we can’t magically appear to lend a hand, and trust me, that hurts a lot of “us” just thinking about it.

As someone who has tried to help and is still in the game with you (although not as much as I would like) I find this hard to read. I wonder if you are talking about me and it confuses me about whether I am helping or not. I would like you to tell me directly what helps and what doesn’t in terms of what I do for you. I want you to know that I consider hard and long how to help you and what would be best-i think and reflect on it a lot. I don’t live near you so I can’t be there often, and it’s painful to know you are suffering. Reading this as one of your far-flung support team I feel sad wondering what might be indirectly directed at me-wondering if you would be willing to tell me directly and start a conversation about that. Your situation is so difficult and painful for you-I do want that to improve for you. I want your health and happiness. Sending love.

Honestly, Mary, I don’t have the energy or well being to start a conversation about who is or isn’t helping. But I do need help and I’m not getting it. I’m very sick and currently using every once of energy I have to get what I need and survive. That’s what it comes down to for me. I slept an hour last night and still haven’t had anyone look at my IV. That’s what I’m concerned about right now. So if you take it personally, that’s your own process to work through. I’m telling everyone how it is for me, because I have no other option.

Aloha, just wanted to say that I wish you every bit of luck with this dragon slaying because I personally know the dragon is real and that , next, you usually have one helluva job getting M.E. cited in your med codes and that wretched dragon acknowledged as real.

It perfectly natural to want the same things as everyone else and it is not selfish to ask for them. Sadly chronic illness doesn’t just rob is of our ability to do things but it robs us of human interaction too. Some people leave because they simply don’t care and good riddance to them! Some people leave because they think we prefer it that way. Some leave because they are embarrassed because they don’t know what to do or say to make things better and some people leave because it all gets too much seeing someone suffer all the time. Then there is the rare person who sticks around. Not because they have to or because they’re family, but because they really do want to be there for us. We need to appreciate them more than we do. Sometimes, when we’re in pain, all we can think about is how it’s affecting us, we don’t realise how hard it is for those who love us to sit and watch and feel helpless. All we can do to show our appreciation is to say thank you and I love you. Beating ourselves up with all the guilt serves no-one. If they’d didn’t want to be there for us, they would have left a long time ago. Sometimes helping us every day is their way of coping with it. When my mum was dying of cancer, she found it hard to accept my help and I said to her “I can’t stop you dying, but if I can help make your journey easier, then I will feel better. I won’t feel quite so helpless”. And it DID help and has been of great comfort through the passing of the years. I know I did all I could for her and I have no regrets. Accepting help can be the hardest thing for us but the greatest gift for our loved ones.

Wow! Tracy, thank you! I’m not sure where to begin but you’re so right about missing the human interactions. I think that transcends my other needs, at least on an emotional level. Thank you for sharing your thoughts. Very well articulated!

I can’t do most of the things you need, being sick myself in the same way, housebound most of the time but not quite as sick as you are. But I can send you an ebook IF it wouldn’t make you more down to read a novel where CFS seems to be keeping someone from getting what she really wants. Not inspirational nor feel-good, but ultimately optimistic, as we must remain if we are to be here when they find the cure (yeah, I’m still hoping after nearly three decades). Fiction is my way of sharing what it’s like, and what it does to us – and maybe finding a way.

Being 68 and having fewer friends as time has passed I find myself often quite alone. I have one friend who brings food but not as often as she used to. I have not asked anyone for help other than a social agency which supplied me with a volunteer who helps with chores around the apartment. I am a little uncomfortable asking him for help. Perhaps it would be good to get over this. I was also getting meals on wheels but had to discontinue as the food was not something I found pleasing.

Most disturbing is that a married couple (old friends) had been very attentive the first two years but now I have not heard from them in quite awhile. I am reluctant to call them. Other friends have not volunteered and I haven’t asked. As you can imagine most of my friends too are getting old. There is a volunteer ride service here in Madison for seniors for doctor appointments and that has been a great help. I can still get out some days and make my way to a small expensive neighborhood grocer. That is a good thing as the library branch is nearby and I get my books at the same time. I read most of the time now as I had to give up painting which I had been doing for 50 years.

Sometimes I find myself wanting to tell my mom I’m sick and I suppose I still do in my head. She died a year ago at 98. That seems like an innate behavior. When she was alive I would tell her I was very sick and she’d say that she was too but she always told me she wished there was something she could do. She said she would move in with me and take care of me. Problem was she couldn’t walk anymore nor see. She couldn’t hear so well either. At one point she asked me to move into her nursing home with her. I told her the cost was about $90,000 a year. The idea of course was ridiculous but it was a nice gesture.

A couple of weeks ago my landlord dropped a bomb on me. He told me he sold the building and to one of the most ruthless rental management companies in town. My rent had been very reasonable, several hundred dollars below market. Now I am sure I will be forced out. I haven’t a clue how I will find a place. The whole thing is very daunting.

I am pretty sure this disease won’t kill me which means more very difficult times ahead unless something else gets me. Sometimes I wish for that. There is a doctor (Dr. Ron Davis) at Stanford who is now devoting his research to CFS. His young son, a successful photographer, was stricken with this dreaded disease and is far worse off than I. I think he is bed bound. Sounds like you are as well. You have not mentioned social agencies in your article. Perhaps that is not an option where you live.

My hope lies with people like Dr. Davis but it could be a long time coming. Here’s a link. Thanks Jamieson.

Darn, I’m sorry to hear about the rental situation. I must say that is really endearing that your mom wanted you to move into the nursing facility with her. And she wanted to take care of you. She sounds like a sweet woman. Thank you for sharing all that! And I hope you can get back to painting soon.

“They run out of time and money and mental bandwidth to lend to even the most beloved person in their life.” What a true statement. I like that….’mental bandwidth’. I’m one of the ‘lucky’ ones, if you want to call it that, that has a husband. We’ve been married for 22 years. He does the best he can, but with a full time job where he works out of town 90 miles away I see him….maybe…4-5 days a month. I think it’s really the only way he can cope. We’ve got a system down. I don’t resent him for not being here most of the time and in turn he doesn’t seem to resent that I’m sick and unable to participate in most anything. I often say that if I’d have married some of the other beaus I had along the way, they would have jettisoned my escape pod long ago. And family help…..completely and utterly non-existent. And friends, long gone…not a single person comes by or offers help anymore. I often ponder what makes one person with ME/CFS keep plodding and plodding and trying and trying…..and some give up, like my friend Cathy who jumped off the floor of her 12th floor balcony condo. And I so understand about the spiritual aspect. I’m a Christian and have been for years but one of the things I wrestle with over and over (and over) is that it’s hard to feel ‘loved’ by God when we suffer so much. The only answer I come up with is that complete free will comes all the woes and ills of this world. You can’t have both, it seems. I went through a period where I was so angry that I refused to believe in God. Yet, when I tried to look at it in a purely logical and scientific way, if there is a ‘creation’ in a literal sense anything, there must be a ‘creator’. The earth and all that it encompasses is so not-random. There is an order to things that defies that randomness. Well, anyway, I’m certainly not trying to preach or convince anyone of anything for which I CLEARLY don’t have answers (LOL). I just feel for you and know, so intimately, how heinous this illness is and how much it robs one of even the most basic things.

Hi Stephanie, damn, sorry to hear that about the people missing from your life. It’s frustrating. I’m glad that you have religion to help you. I think religion is a beautiful thing that brings people together and I think the wonderful thing about many people who believe in God is that they are very accepting of people like me, so I try to be accepting of all religions. I wish I had more time to learn about each of them — Islam and Mormonism have always fascinated me. I guess Scientology even fascinates me in a way. That’s how accepting I am. Haha. #NoOffenseToAnyone

This is one of the things I struggled most with too. When I first got ill I found out who my real friends were because the rest disappeared. Along the way people have dropped out because it’s so fucking boring to see someone dealing with the same shit 9 years later. We’re used to stories that have a beginning, middle and an end and ME is generally one long middle with no end in sight. Society doesn’t set people up to know how to deal with that. Doesn’t make it any easier for those of us who suffer. Hope you are feeling better now than when you wrote this post Jamison. Xx